Hello everyone,
im 35, female
i think i possibly have MS, no idea what kind, but i have 90% of the common symptoms. Ive had several tests done (mostly over the last 2 years), although have been having MRI’s in relation to a lower back injury (L5/S1). All result (excluding those in relation to my back injury), have come back normal - barring my Vitamin D level - which was less than 10, 3 years ago, and currently 24, with a high of 32. i think normal is 70+. i also have ADHD , dyslexia and dyspraxia, plus acid reflux (newly diagonised)
My back is injured at L5/S1, with a disc bulge which puts pressure mostly on the right side nerves, although some pressure has happened on the left as well. I have had one surgery, that removed part or the disc and some of the bone to create more space in the joint for the nerves to help stop damage to the nerves, and compensate for any further relapse of the disc. The disc occasionally relapses, but the gap seems to be helping although not curing the problem.
Symptoms ive had for the last 7 years ( which have been put down to my back problem)
pins and needles in legs , numbess in legs and foot (can last minutes or days), shooting pain/ nerve pain in both legs, patches of reduced sensation, lack of feeling in the bladder causing a sudden urge to pee, or not knowing i need to pee until my whole stomach hurts, generalised lower limb pain, difficulty walking (lasting maybe minutes to several months), feeling like my legs aren’t responding or are slow to respond when i want to move them, weakness in legs (although this is usually only when the injury worsens), pain across hips and lower back
over the last 18 months / 2 years these symptoms have changed, and seem to be present regardless of how much pressure the nerve is under, and don’t seem to be to have as much pain in my back as i once did.
treatment for my back consists of numberous painkillers (im allergic to anti-inflamatories), gabapentin (for nerve pain and pins and needles), diazapan for cramps/spasms , anti-histamine for itching/skin crawling feeling.
new symptoms over the last 2 years are - a change in the way my lower limb symptoms feel -extremely hard to explain , cramping in hands (worst area), arms, neck and throat back (along the sides upper and mid back), ribs, difficulty swallowing sometimes due to cramp and /or numb tongue or just with dry foods such as bread, rice etc, lessening of feeling in fingers meaning i cant grasp things as well, pins and needles in fingers, hands, arms, feet, legs, swelling in legs and ankles, sluggish movement of legs, balance problems, stiffness (particularly legs), pains throughout my body, constipation, stomach cramps, IBS like symptoms (not diagnosed), headaches, spotting in version (recent eye test says eyes are fine) cold hands and feet. joint pain, nerve pain generalised pain,nausea, fatigue - sometimes just getting up and dressed is all i can manage, if i dont rest i get more nausea, until i have no choice but to sleep, feeling like i have insects crawling along the bottom of my feet, frustration, mood swings, feeling hopeless, lack of concertration (although that is possibly ADHD related) ----- im sure ive missed stuff
My worry is several of the symptoms that relate to my back injury also are symptoms of MS, and seem to just be getting overlooked. For instance about 18 months ago i started to develop pain stiffness in my neck, pins and needles in my hands and pains, cramping all over but mostly hands and throat. i mentioned this to my back consultant, who recommended we do an MRI and x ray of my neck to see if there was any sign of a disc problem (like in my lower back). The x ray came back clear, and the only thing showing in the MRI, was what the consultant reffered to as a “bubble” (could this of been a lesion) the MRI i had was the one with dye. He said that he couldn’t see any sign that the pain and numbness was caused by a disc problem and to see my GP in regards to further testing for these symptoms (although no suggestion of which tests)
i regulary use a zimmer to get around as my legs become randomly, stiff, sluggish,painful, numb and not wanting to function. Although this leads to cramping in my hands from holding the zimmer and my body getting to tired.
ive seen a rheumatologist, who stated it was unlikely i have fibro - (my mum has it so wanted to rule it out quickly), and he thinks its more of a soft tissue / neuro problem. they have also recommended i have more diazapan, and speech therapy to help my throat muscles
My back consulant has recently given me a epidural, which has helped with leg pain but not numbness, tingling pins and needles.
blood test for hormone function , thyroid, blood count, kidney function, liver function, al normal
BP normal , even had a doppler test - blood pressure in both arms and legs check at the same time - normal
BMI - high , but exercise is hard with fatigue and pain, plus the worry of falling - i walked just under a mile (to the local post office from work) the other day and needed 4 days to recover.
im seeing my GP again soon to discuss what to do now, i feel my symtpoms fit with MS, and im hoping the GP is willing to do a referal for me to possibly get a full MRI, and not just one focused on the l4/l5/s1 region of my back
Is there any advice you’d give me? has anyone else had a back injury and it interfered with things?
are there any other tests you suggest for me?
any help would be great cos i feel like im losing my sanity